ASV One Week Trial - Continuing Updates

[jbn3boys]

Okay -- a decent night's sleep and a fresh attitude and perspective. I want/need to do this.

Excellent! I love the fresh attitude and perspective. You CAN do this, Maddy! We are all rooting for you!

Hang in there, keep asking for help, and know that we are all behind you, cheering you on!

Hugs,
jbn

[Madalot]

Very interesting. It's amazing how feeling more fresh in the morning, I can read the comments from yesterday and afternoon and more or less "get them." Yesterday afternoon -- FORGET it. My brain got overwhelmed and did a massive shutdown.

Another interesting point, I slept with the ventilator last night. Mask leaks were minimal. I believe that even though I like the humidity, the resulting mask leaking issues don't justify doing it.

Anyway -- here are the reports from the ASV on Wednesday, with a period of the lowest Minute Ventilation (around 2:30ish am) -- -SWS -- is this what you meant?

[Madalot]

Being that I am running out of time on this test and I am only so knowledgeable as to analyzing the data, I'm going to have to ASSUME that I would do well on either machine and make a decision here soon.

I tried the ASV with the humidifier in passover mode and it wasn't as bad, but I still had moisture on my mask/face that caused leaking that woke me up.

The last two nights, I've slept on the ventilator and I've slept about as well as ever. Not too bad - a few awakenings, but okay. The mask I am using now does NOT leak much on the Trilogy, which has been good because for whatever reason, my previous mask (new out of the box in November) was a weird one that just would not get leaks into the range I like.

So, it comes down to a financial issue, which is not as easy as it would seem.

My contact at my DME is a good guy. When I asked him some very direct questions, he answered them openly and honestly -- telling me exactly what I expected to hear, but also giving me both his professional (from the DME standpoint) and his personal (what he and his conscience feels) opinions about my best decision.

At the time I was given the Trilogy, it was being marketed as the next generation of equipment (my words, not theirs) for treatment of people like me. He said that had I been with them when this happened, I would NOT have been given the Trilogy because they weren't jumping on that bandwagon like my original DME did. The reason was because of the way the Trilogy has to be billed through insurance - and boy do I see that. Had I been with them, I would have been given an ASV and wouldn't be in this mess.

And it is a mess.

There are definite pros and cons to either decision. The financial aspect of the ASV is obvious - 13-month rent-to-own deal. The downside of that is that I lose my status as a vent patient and thus do not have the same type of access to emergency service that I get now. I also do not get a battery backup system provided.

My DME is contact is checking a few things for me, including a few financial questions IF I chose to stick with the Trilogy. I don't want to get into the details of that because it's probably TMI at this point.

My final decision will most likely rest with what he is able to find out for me about the financials - sad, but it's going to come down to that most likely.

[-SWS]

Madalot, I was looking at your above graphs as you posted. Before commenting on the graphs, I'd like to add to this train of thought:

I'm going to have to ASSUME that I would do well on either machine and make a decision here soon.

If I were in your situation, my own thoughts would go something like this:
1) ASV algorithms are generally not the best choice for hypoventilatory conditions (rather ASV is targeted for "short cycling" problems in central control)
2) So will my NMD progress more toward hypoventilation problems more than typical central apnea or obstructive apnea?
3) If so, then my condition will progressively migrate further away from what ASV was designed to treat.

Again, that last point has to do with ASV's narrow running baselines employed for both scoring and treatment.

Let's take a brief look at this graph:


That graph resolution tells us that your minute ventilation was 4.0 liters per minute, during that particular time window (corresponding to the vertical line on events graph in your post). That might be a marginally low MV for you. I’d suggest asking your pulmonologist and/or RT what your minute volume (MV) baseline should be.

Then ask them for a low MV threshold---one that you can be on the lookout for while screening your data for signs of hypoventilation. Bear in mind that hypoventilation is characterized as carbon dioxide buildup caused by extended time spent at insufficient MV (with partial pressure of carbon dioxide (PCO2) typically ≥45 mm). In other words, hypoventilation results in a carbon dioxide buildup because of extended time spent breathing too shallow.

After screening your graphs for extended periods spent below your doctor's suggested low MV threshold, you and your doctor can then decide if the ASV is presently a suitable/unsuitable candidate treatment for you. If you elect to pursue ASV, then I would suggest an ASV titration in the lab with some type of CO2 monitoring during sleep.

Finally, bear in mind that you are presently evaluating ASV’s efficacy based on your physiology today. If your NMD is known to progress more toward hypoventilation, then today’s ASV evaluation becomes moot relative to future needs. So I would encourage you to ask your doctor what she thinks about ASV for your condition---now and a few years down the road.

I'm guessing the intended spirit of your home-based ASV trial was to see if ASV somehow really clicked----with your quality of sleep and/or daytime symptoms. If ASV really clicked, then I think you'd have a compelling reason to adopt ASV as your present treatment. However, if you fail to find a positive subjective improvement, then ASV is not really a suitable treatment platform for NMD IMHO.

I'm not sure you wanted to hear everything I had to say. Like so many here, I am rooting for you. My heartfelt best wishes, Madalot.

[JohnBFisher]

By the way, if you do go ASV route, I can help you (and your husband) put together a battery backup system that will more than do the job at a (comparatively) modest cost. Fortunately, that part of the equation is quite simple. So, don't let that part worry you. Instead, as -SWS points out, I would be more concerned about the hypoventilation. I'm glad that -SWS chimmed in.

Know you are in our thoughts and prayers.

[Madalot]

I'm not sure you wanted to hear everything I had to say. Like so many here, I am rooting for you. My heartfelt best wishes, Madalot.

On the contrary, I want and NEED to hear every bit of it. I told my husband that when -SWS talks, everybody listens! Kind of like those financial commercials!!

What you said makes sense and I need to read it again, probably several times.

My doctor has given me several parameters for treatment. She wants my AVERAGE MV to be at least 5, my Tidal Volume at least 400. I believe both machines are maintaining that.

My motivation for trying the ASV was financial (for starters) but also to see IF I could improve my sleep and the way I feel overall. The ASV has NOT been a miracle in either of those regards.

I wish I could find a way to get the Trilogy to use a mode where I could vary the EPAP and not alarm on me. The ASV IS moving the EPAP around from around 7 to 12, which I think is a good thing in treating the OA aspect of my situation. At this point, the mode that will do that alarms on me half the night and disabling it isn't possible.

This is so tough because we still do not have a definite, 100% certain diagnosis of exactly what is happening with me. Because of that, there's no way to really gauge what the future holds.

My thanks, -SWS for the information you have provided. I DO want to hear everything you have to say. It's important.

[Madalot]

By the way, if you do go ASV route, I can help you (and your husband) put together a battery backup system that will more than do the job at a (comparatively) modest cost. Fortunately, that part of the equation is quite simple. So, don't let that part worry you. Instead, as -SWS points out, I would be more concerned about the hypoventilation. I'm glad that -SWS chimmed in.

Know you are in our thoughts and prayers.

Thanks, John. Much appreciated.

On another note -- my OFFICIAL diagnosis from my pulmonologist IS nocturnal hypoventilation syndrome due to neuromuscular disease.

[HoseCrusher]

When faced with a decision like this, you need to address all the variables. Unfortunately, you may not be aware of all of the variables. Then you have to decide based upon the variables you do know.

It looks like you have determined that both machines help you sleep.

It also looks like each machine has its own quirks.

Financial issues are involved. If nothing else sticks out, they may govern your decision.

One thing that hasn't come up very much is your general condition. You need to try to figure out a rate of decline. If you end up on invasive ventilation, the Trilogy is the way to go. If that is where you are headed, the question is how long before you get to that point. Your past history is not directly related to your future, but it gives you an indication that is very general.

I really don't like to bring this up, but it is time to have this discussion with yourself and your husband.

If both machines are capable of meeting your needs today, the decision based upon financial issues makes sense. However, future needs may be different than today's needs and you need to have a rough guess what those future needs may be.

Your medical professionals can advise you on how people with your condition progress. Your DME has given you information from their perspective. Your numbers and graphs show another perspective that has a very important consideration. And finally there is the financial aspect.

Throw all of this together and mix well. Base your decision not only on your current condition, but also on your best estimate of where you will be in 6 - 12 months.

When I look into my crystal ball, I see you dancing through the kitchen doing pirouettes. However there have been occasions when my crystal ball has been wrong...

It is good that your cold has cleared up. It is a little easier to maintain perspective when your head is a little clearer.

Both machines are good. Either way you choose you will most likely be well taken care of.

[-SWS]

HoseCrusher, you offer some really good decision-making criteria. However, I can't say I agree with this part:

Either way you choose you will most likely be well taken care of.

The ASV is really not targeted for Madalot's condition, whereas the Trilogy is. So are BiPAP S/T and AVAPS:



I assume Madalot's doctor agreed to this ASV trial purely as exploratory. IMHO the ASV machine would had to have elicited a "Eureka! This treatment works surprisingly well!" type statement to justify continuation of ASV. The ASV treatment platform is really off-label for progressive neuromuscular disease.

[HoseCrusher]

SWS, thank you for that correction.

Since I know next to nothing about either machine, I was just pontificating my ignorance...

With that said, it seems the choice may be narrowed down a little making a choice easier.

[Madalot]

Excellent info, -SWS. Thank you.

Based on the Respironics chart, something is really nagging at me. My doctor and DME have both said the ASV should work fine for me long term, if I choose that. If the guidelines from Respironics say AVAPS or S/T, why would they agree to an ASV?

I can come to several conclusions, none of which I care for.

[Madalot]

It doesn't seem to me that either machine (ASV or Trilogy) gives me what I'm looking for as far as daytime wellness. At first, the ASV SEEMED better, but then wasn't. So, I switched back to the Trilogy and for a night/day or two, it SEEMED better. Now, it's not.

My first nap on the ASV, I felt pretty good when I woke up. A couple days later, I awoke from a similar nap and felt like complete crap. Same thing happens on the Trilogy -- sometimes I feel semi-okay after a nap, sometimes I feel like I've been run over by a truck.

It seems like NEITHER machine gives me what I need on a regular basis. This makes no sense.

How in the heck (cleaned up because that's NOT the word that was in my head) am I supposed to chose a machine that works better for me when NONE of them seem to be better/good consistently?

When I think back to November 16, 2009, an hour or so after waking up from my CPAP titration, I felt a little bit more energized, more so than I had been in a long time. I told my husband that if using CPAP was going to give me that slightest bit more energy on a consistent basis, it was worth it.

Here I am, February 2012 and am still trying to find that consistent energy boost that I got from the first night on cpap. I told my husband that I do not remember what it feels like to feel good - or even decent enough to want to do anything. In truth (and this is so hard to say) I think I feel WORSE for being on the breathing equipment than I did before. The biggest benefit is not struggling to breathe at night, which IS a big deal, but is the way I feel in the daytime worth it?

My husband and I are talking about my going off all equipment for a week or so, just to see if I feel better during the day. I know this is NOT a great idea and is pretty radical. I doubt my doctor will be in favor of this, but the way I have felt during the day for the last two+ years really stinks.

I don't expect miracles, but I would like to have some semblance of a life back.

[HoseCrusher]

Rather than just stopping, is it possible that either machine can be "dumbed down" to function like a basic CPAP machine? If so, you could set it at the pressure that you spend most of the night at and bypass having the machine trying to respond to you. It could be that during your titration they were giving you a fixed pressure.

[Madalot]

Rather than just stopping, is it possible that either machine can be "dumbed down" to function like a basic CPAP machine? If so, you could set it at the pressure that you spend most of the night at and bypass having the machine trying to respond to you. It could be that during your titration they were giving you a fixed pressure.

They did give me a straight cpap pressure during my titration. IPAP was 11 after titration. After two weeks, overnight pulse ox indicated a serious 02 drop, so they increased my pressure to 13. Two more weeks and another overnight pulse ox -- got switched to bipap. They said that I was not able to EXHALE against a fixed pressure, thus why I needed bipap.

We could try dumbing down again -- perhaps basic bipap, but I HAVE tried that and it didn't matter. I have the secondary settings on the Trilogy to basic Bipap S/T -- but I found I felt a bit better with AVAPS, so I switched back to that.

I am at the point where I think NOTHING is going to make this good. It's varying degrees of acceptable.

[-SWS]

Hosecrusher brings up a good point IMO. Each machine offers multiple treatment modalities. The AVAPS machine, for instance, can run every modality the BiPAP S/T machine can run, in addition to AVAPS mode. The Trilogy vent can run every modality offered by the AVAPS and BiPAP S/T machines in addition to ventilator modalities.

So if finances were the driving consideration, I'd ask the DME and doctor to set me up with an AVAPS machine. If additional on-label treatment modes were the driving decision, then the Trilogy makes more sense here.

Since the ASV trial didn't pop with a pleasantly surprised "Eureka!" statement, it makes absolutely no treatment sense for progressive NMD. Again, the ASV algorithms are designed for "short cycle" problems in central regulation---but NOT hypoventilation. The more pronounced or extended a patient's hypoventilation becomes, the more incompatible their condition happens to be for ASV's narrow flow-targeting baselines. I'd immediately toss the ASV into the discard pile for lack of a pleasant "Eureka" observation.